Message Thread

"Hospital not knowing any thing about MH"

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by: Claudia
on 10/29/2009 at 4:57:49 AM

I was in two different hospitals this last two weeks. and both hospitals didn't call the medial alert or MH hotline. To see what drugs I can and can't have. One Dr ask me what level of Hyperthermia do I have. I told him I don't have Hyperthermia. I have Malignant Hyperthermia. He ask me where I had my Radiation dont at. All of the nurse taking care of me didn't know what MH was. They gave me a triggering drug IV and My Kidneys are in alot of pain. UA was brown. Muscle hurting, joints swollen. So I am out of the hospital now. I don't feel very good and alot of pain in the kidneys. So I am drinking alot of water and taking pills to get rid of fluid. It is amazing how Dr.s and Nures can make you condition worse. Has any one else had this problem?


by: Bruce
on 11/12/2009 at 8:53:35 PM

I understand your situation. When I had my reaction to succinylcholine, the Dr's and the anestesiologist had no idea what was wrong. If it weren't for the recovery room nurse, I would have been discharged. No CK labs were ordered. No Dantralene was administered. I spent the night receiving IV hydration with a cathetor. The reaction ran its total course and I now have kidney damage from the event.

I had a heart procedure last month. I was happy to see that MH was listed in the preoperative questionnaire. I would hope that all hospitals, doctors and nurses would be educated on MH. It looks like the word is getting out.

My recommendation would be for you to make sure your MH is known in all of the hospitals close to you. Also, be very proactive with your doctors about MH. Eventually, the word will get out and precautions will take place.